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1 STATE OF OKLAHOMA
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2 1st Session of the 60th Legislature (2025)
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3 SENATE BILL 207 By: Woods
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6 AS INTRODUCED
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7 An Act relating to public health; establishing the
7 Oklahoma Rare Disease Advisory Council; stating
8 purpose and activities of the Council; providing
8 appointment procedures and membership requirements;
9 requiring submission of certain annual report;
9 prescribing certain meeting requirements; specifying
10 duration of membership terms; providing for filling
10 of vacancies; defining term; amending 63 O.S. 2021,
11 Section 1-533, as amended by Section 1, Chapter 161,
11 O.S.L. 2022 (63 O.S. Supp. 2024, Section 1-533),
12 which relates to educational and newborn screening
12 programs; modifying certain screening requirement;
13 requiring compilation and publication of certain
13 annual report; creating the Newborn Screening
14 Revolving Fund; specifying type of fund and source of
14 monies; providing for expenditure of funds; providing
15 for codification; providing an effective date; and
15 declaring an emergency.
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18 BE IT ENACTED BY THE PEOPLE OF THE STATE OF OKLAHOMA:
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19 SECTION 1. NEW LAW A new section of law to be codified
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20 in the Oklahoma Statutes as Section 1-451 of Title 63, unless there
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21 is created a duplication in numbering, reads as follows:
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22 A. The Oklahoma Rare Disease Advisory Council shall be
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23 established within the State Department of Health in accordance with
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24 this section.
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1 B. The purpose of the Council shall be to provide guidance and
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2 recommendations to educate the public, the Legislature, and other
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3 state agencies, as appropriate, on the needs of individuals with
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4 rare diseases living in this state.
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5 C. The Council shall conduct the following activities to
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6 benefit those impacted by rare diseases in this state:
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7 1. Convene public hearings, make inquiries, and solicit
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8 comments from the general public in Oklahoma to assist the Council
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9 with a first-year landscape or survey of the needs of rare disease
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10 patients, caregivers, and providers in the state;
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11 2. Provide testimony and comments on pending legislation and
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12 regulations before the Legislature, if called, and other state
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13 agencies that impact Oklahoma's rare disease community;
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14 3. Consult with experts on rare diseases to develop policy
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15 recommendations to improve patient access to, and quality of, rare
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16 disease specialists, affordable and comprehensive health care
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17 coverage, relevant diagnostics, timely treatment, and other needed
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18 services;
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19 4. Establish best practices and protocols to include in state
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20 planning related to natural disasters, public health emergencies, or
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21 other emergency declarations to enable continuity of care for rare
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22 disease patients and ensure safeguards against discrimination for
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23 rare disease patients are in place;
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1 5. Identify areas of unmet need for research and opportunities
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2 for collaboration with stakeholders and other states' rare disease
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3 advisory councils that can inform future studies and work done by
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4 the Council; and
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5 6. Research and identify best practices to reduce health
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6 disparities and achieve health equity in the research, diagnosis,
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7 and treatment of rare disease in this state.
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8 D. 1. The Council's appointment process shall be conducted in
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9 a transparent manner to provide interested individuals an
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10 opportunity to apply for membership on the Council. All members of
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11 the Council shall be full-time residents of this state as
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12 practicable. Membership shall include a diverse set of stakeholders
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13 representative of the geographic and population diversity of the
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14 state.
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15 2. The Governor shall appoint the chair of the Council not
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16 later than December 1, 2025. The chair shall not hold any position
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17 within the government of this state.
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18 3. The chair shall appoint no fewer than thirteen (13) members,
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19 including the following:
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20 a. one representative of an academic research institution
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21 in the state that receives any grant funding for rare
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22 disease research,
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23 b. one representative of the Oklahoma Health Care
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24 Authority,
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1 c. one representative of the Insurance Department,
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2 d. one Registered Nurse or Advanced Practice Registered
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3 Nurse licensed and practicing in this state with
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4 experience treating rare diseases,
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5 e. one physician practicing in this state with experience
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6 treating rare diseases,
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7 f. one hospital administrator, or his or her designee,
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8 from a hospital in this state that provides care to
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9 persons diagnosed with a rare disease,
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10 g. at least two patients who have a rare disease,
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11 h. at least one caregiver of a person with a rare
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12 disease,
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13 i. one representative of a rare disease patient
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14 organization that operates in this state,
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15 j. one representative of the biopharmaceutical industry,
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16 k. one representative of a health plan company, and
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17 l. one member of the scientific community who is engaged
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18 in rare disease research including, but not limited
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19 to, a medical researcher with experience conducting
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20 research on rare diseases.
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21 4. The chair may appoint additional members on an ad hoc basis.
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22 E. 1. The Council shall electronically submit a report to the
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23 President Pro Tempore of the Senate, the Speaker of the House of
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24 Representatives, and the Governor within one (1) year of
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1 establishment of the Oklahoma Rare Disease Advisory Council and
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2 annually thereafter. Prior to submission, a draft of the annual
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3 report shall be made available for public comment and discussed at
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4 an open public meeting.
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5 2. Annual reports shall:
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6 a. describe the activities and progress of the Council
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7 under this section, and
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8 b. provide recommendations to the Legislature and
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9 Governor on ways to address the needs of people living
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10 with rare diseases in this state.
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11 F. 1. The initial meeting of the Council shall occur no later
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12 than February 1, 2026. Thereafter, the Council shall meet no less
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13 than quarterly.
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14 2. Meetings of the Council shall be conducted in accordance
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15 with the Oklahoma Open Meeting Act.
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16 G. The Council shall:
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17 1. Provide opportunities for the public to hear updates and
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18 provide input into its work; and
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19 2. Create and maintain a public website where meeting minutes,
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20 notices of upcoming meetings, and public comments may be submitted.
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21 H. 1. The Governor shall appoint the chair for an initial term
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22 of three (3) years. At the end of the chair's initial three-year
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23 term, and every two (2) years thereafter, members of the Council
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24 shall elect, by a majority vote, a new chair.
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1 2. Council members shall serve no longer than three (3) years,
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2 except that, to facilitate a staggered rotation of members to retain
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3 continuity and knowledge transfer, during the initial five (5) years
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4 after the establishment of the Council, members may serve up to a
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5 four-year term.
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6 3. If a vacancy occurs, the Council, by a majority vote, shall
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7 fill such vacancy in a timely manner and in compliance with
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8 requirements set forth in subsection D of this section.
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9 I. As used in this section, "rare disease", sometimes called an
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10 orphan disease, means a disease that affects fewer than two hundred
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11 thousand (200,000) people in the United States.
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12 SECTION 2. AMENDATORY 63 O.S. 2021, Section 1-533, as
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13 amended by Section 1, Chapter 161, O.S.L. 2022 (63 O.S. Supp. 2024,
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14 Section 1-533), is amended to read as follows:
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15 Section 1-533. A. The State Commissioner of Health shall
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16 provide, pursuant to the provisions of Section 1-534 of this title,
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17 as technologies and funds become available, an intensive educational
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18 and newborn screening program among physicians, hospitals, public
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19 health nurses, and the public concerning phenylketonuria, related
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20 inborn metabolic disorders, and other genetic or biochemical
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21 disorders for which:
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22 1. Newborn screening will provide early treatment and
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23 management opportunities that might not be available without
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24 screening; and
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1 2. Treatment and management will prevent intellectual
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2 disabilities and/or reduce infant morbidity and mortality.
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3 B. This educational and newborn screening program shall include
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4 information about:
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5 1. The nature of the diseases;
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6 2. Examinations for the detection of the diseases in infancy;
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7 and
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8 3. Follow-up measures to prevent the morbidity and mortality
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9 resulting from these diseases.
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10 C. For purposes of this section, "phenylketonuria" means an
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11 inborn error of metabolism attributable to a deficiency of or a
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12 defect in phenylalanine hydroxylase, the enzyme that catalyzes the
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13 conversion of phenylalanine to tyrosine. The deficiency permits the
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14 accumulation of phenylalanine and its metabolic products in the body
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15 fluids. The deficiency can result in intellectual disabilities
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16 (phenylpyruvic oligophrenia), neurologic manifestations (including
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17 hyperkinesia, epilepsy, and microcephaly), light pigmentation, and
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18 eczema. The disorder is transmitted as an autosomal recessive trait
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19 and can be treated by administration of a diet low in phenylalanine.
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20 D. To the extent practicable, the list of disorders screened
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21 for under this section shall be identical to at a minimum include
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22 those listed in the Recommended Uniform Screening Panel of the
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23 United States Department of Health and Human Services.
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1 E. On November 1, 2026, and each November 1 thereafter, the
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2 State Department of Health shall compile an annual report listing
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3 the disorders screened for under this section, specifying any
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4 disorders added since the prior annual report, and detailing efforts
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5 being undertaken to add additional disorders. The report shall be
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6 published on the Department's website and shall be submitted
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7 electronically to the President Pro Tempore of the Senate, the
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8 Speaker of the House of Representatives, the Governor, and the
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9 Oklahoma Rare Disease Advisory Council established under Section 1
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10 of this act.
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11 F. The Commissioner shall promulgate any rules necessary to
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12 effectuate the provision of this section.
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13 SECTION 3. NEW LAW A new section of law to be codified
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14 in the Oklahoma Statutes as Section 1-533.1 of Title 63, unless
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15 there is created a duplication in numbering, reads as follows:
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16 There is hereby created in the State Treasury a revolving fund
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17 for the State Department of Health to be designated the "Newborn
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18 Screening Revolving Fund". The fund shall be a continuing fund, not
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19 subject to fiscal year limitations, and shall consist of all monies
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20 received by the Department from appropriations provided for the
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21 purpose of conducting newborn screening under Section 1-533 of Title
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22 63 of the Oklahoma Statutes. All monies accruing to the credit of
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23 the fund are hereby appropriated and may be budgeted and expended by
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24 the Department for the purpose provided for in this section.
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1 Expenditures from the fund shall be made upon warrants issued by the
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2 State Treasurer against claims filed as prescribed by law with the
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3 Director of the Office of Management and Enterprise Services for
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4 approval and payment.
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5 SECTION 4. This act shall become effective July 1, 2025.
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6 SECTION 5. It being immediately necessary for the preservation
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7 of the public peace, health or safety, an emergency is hereby
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8 declared to exist, by reason whereof this act shall take effect and
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9 be in full force from and after its passage and approval.
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